Another note from Dr Ameisen

[redhead77]

Another note from Dr Ameisen

Wow, I didn't even know pm's could be cut and pasted here. I just assumed they were called private for a reason. I guess we should be telling redhead jokes rather then blonde jokes, afterall. :H

37, it works. I will post later on my own thread. A few more days to be sure. I always believed, but it got difficult at times. Really difficult with my side effects. I thought of giving up.

I did not have SE's of not being able to get out of bed or suicide, however. Those in and of themselves are serious issues. There is no point in trying to cure your alcoholism if you want to off yourself. I won't offer you titration advice. I think your smart enough to know how to do it.

I'm sorry 37. I still hope you try again. It's real.

[LittleLessBoozin']

Another note from Dr Ameisen

I always heard about addicts who turn into self righteous assholes after they remove said substance from their lives, or join the recovery crusade, but never saw it more close up than what I'm seeing now, on this thread and in a few other places in this med section.

Fact: OA discovered that baclofen could be used to suppress craving in alcoholics. He used himself as a guinea pig and then wrote a book about it with a strong desire to help other alcoholics.

Fact: Because of the above mentioned efforts, baclofen has helped many, many alcoholics.

For those who can't find it in themselves to have enough respect for the guy to refrain from malicious gossip, I ask that you take a good hard look at yourself. What you are doing is wrong. It's mean, petty, and not benefiting a single person on this site. I ask that you examine your motives and your own damn personal issues.

Fact: Nobody HAS to take baclofen. It is a choice you can freely make... or not.

OA doesn't OWE anybody a fucking thing. Recovery is YOUR issue. He gave alcoholics a tool. If you can't be grateful, then STFU.

I don't know if I'm included as one of these 'assholes' or not, but just to restate my initial post:

- I believe baclofen may help me
- I'm concerned about the mental health effects of long term high dose baclofen usage
- Dr. Amiesen's message /was/ a semi coherent rant. This could be for any number of reasons, and I'm not disrespecting the man at all, I'm just making a dispassionate comment based on reading this bizarre outpouring.
- My posts were in no way meant to 'spread rumours', I am simply trying to better understand the mental health implications of long term baclofen usage

No apologies, no withdrawals- I'm just a guy looking for a way out... but I also happen to be a scientist with legitimate concerns about short and long term side effects of an experimental, off label use for a powerful drug which many (including me!) are self prescribing. Because of this, I find it alarming to see a highly intelligent professional writing a ranty email, and distributing it through a randomly picked member of a discussion forum- this is clearly not normal behaviour, and heightens my already grave concerns about the long term safety of high dose bac.

I hope that this clarifies any misunderstandings, and if anyone still believes I'm some kind of ungrateful arsehole then so be it.

Paul.

p.s. I got shipping confirmation today- very scared, oddly excited, and wondering exactly what I'm going to tell my wife :-S

p.p.s. I got shipping confirmation, not delivery, so see you later- I'm off to indulge in a couple of Margaritas ;-)

[37degrees]

Another note from Dr Ameisen

redhead77;1097711 wrote: Wow, I didn't even know pm's could be cut and pasted here. I just assumed they were called private for a reason. I guess we should be telling redhead jokes rather then blonde jokes, afterall. :H

37, it works. I will post later on my own thread. A few more days to be sure. I always believed, but it got difficult at times. Really difficult with my side effects. I thought of giving up.

I did not have SE's of not being able to get out of bed or suicide, however. Those in and of themselves are serious issues. There is no point in trying to cure your alcohlism if you want to off yourself. I won't offer you titration advice. I think your smart enough to know how to do it.

I'm sorry 37. I still hope you try again. It's real.

Thanks, Red #1 or #2 (I forget which). I am very glad that you are doing well.

My SE's were interesting to say the least. I have not been psychotic or suicidal any time in the past, so I am pretty sure they were from the medication. Aside from AL, and casual marijuana use in college, I haven't used any other psychoactive drugs. The visual hallucinations of walking on the walls, accompanied by sustained audio commentary from the side, and extreme agitation gave me an unwelcomed insight into the worlds of some of the people I (and you) deal with day to day.

I think I have gotten enough info about high-dose baclofen from this board and other sources to understand the risks/benefits involved, and in view of my own experience, I will move on.

I have been occasionally lurking here and PM'ing various folks (as you know), but apparently PM's are not private. Since I no longer use baclofen at all, I will just remove myself from the scene altogether.

I appreciate the insights, humor, and shared experiences here, and I wish everyone the best.

37

[ignominious]

Another note from Dr Ameisen

Chi;1097435 wrote: I always heard about addicts who turn into self righteous assholes after they remove said substance from their lives

Some people don't need to remove the alcohol


EDIT: Not aimed at you 37. Haven't seen you around for some time. Sorry to hear about your experiences with baclofen and I hope you're successful elsewhere with your search. I know you weigh the pros and cons fairly seriously and will probably keep an eye on how baclofen treatment progresses

[LadyLush]

Another note from Dr Ameisen

Iggy,

Touche my friend! (I know the thingy should go over the e)
TOUCHE!


Lady:l

[Florieanne]

Another note from Dr Ameisen

Terryk

I don't understand what being French, well-educated, or having "rather qualified notions" has *anything* to do with being more afraid of side effects.

You're misinterpreting. But English is not my native language...What 's making me afraid of long term SE is that considering OA's background, education & gifts, and the well-being he says he has found taking bac....things like his post and what has been mentionned by Ne ( = that I have also heard about) shouldn't be.

I went through SCI and sclerosis forums whose main subjects are not alcohol or cognitive problems. Pain & dealing with everyday life and new ttt are the subjects so I didn't keep the links.

"The recent information about OA, especially coming from neva eva" is what I was also told in France by people in close contact with him. It isn't cold, hard evidence that baclofen is harmful and yet OA is the only one who has been on bac for alcohol for a very long time.
We don't know if OA relapsed and had to start taking higher dose again.
The only thing we know is that both he and Dr L now advise to stay on high dose as long as possible, and if no SE, not to go down, ever....Why?
Unfortunately I feel I can't give him any credit any longer as far as telling the truth is concerned.
It's really great bac works so well for you .
F.

[Florieanne]

Another note from Dr Ameisen

I don't know if I'm included as one of these 'assholes' or not, but just to restate my initial post:

- I believe baclofen may help me
- I'm concerned about the mental health effects of long term high dose baclofen usage
- Dr. Amiesen's message /was/ a semi coherent rant. This could be for any number of reasons, and I'm not disrespecting the man at all, I'm just making a dispassionate comment based on reading this bizarre outpouring.
- My posts were in no way meant to 'spread rumours', I am simply trying to better understand the mental health implications of long term baclofen usage

No apologies, no withdrawals- I'm just a guy looking for a way out... but I also happen to be a scientist with legitimate concerns about short and long term side effects of an experimental, off label use for a powerful drug which many (including me!) are self prescribing. Because of this, I find it alarming to see a highly intelligent professional writing a ranty email, and distributing it through a randomly picked member of a discussion forum- this is clearly not normal behaviour, and heightens my already grave concerns about the long term safety of high dose bac.

I hope that this clarifies any misunderstandings, and if anyone still believes I'm some kind of ungrateful arsehole then so be it.

Paul.

Thanks a lot for this post.

[Murphyx]

Another note from Dr Ameisen

OA doesn't OWE anybody a fucking thing. Recovery is YOUR issue. He gave alcoholics a tool. If you can't be grateful, then STFU.

I may well just add that to my sig line. Thanks Chi.

[Ne/Neva Eva]

Another note from Dr Ameisen

I was wrong. I reread the emails that I've received from Dr. Ameisen last night. I had my husband read them. We listened to the voicemails that he left for me. The only thing that is accurate about my previous posts regarding these is the duration of the voicemails.

He has never been inappropriate. He has never ranted. The voicemails were a sincere and impassioned warning about Dr. Levin. The emails were offers of support and expressed confusion about why anyone would choose medication other than baclofen, the only drug that cures alcoholism.

I made it all up. I don't know how, I don't know why. I believed that what I was writing was the truth. I know that doesn't matter. I apologize. I know that doesn't matter either.

The truth is this:
The emails were entirely appropriate.
The voicemails were completely rational.

By perpetuating the lies and the malicious gossip I may have deterred many others from finding this solution. I will never be able to undo that injury. That is my greatest shame to date.

Dr. Ameisen and baclofen saved my life. I don't drink against my will anymore.

[Ne/Neva Eva]

Another note from Dr Ameisen

x

[Florieanne]

Another note from Dr Ameisen

Ne/Neva Eva;1097876 wrote: I was wrong. I reread the emails that I've received from Dr. Ameisen last night. I had my husband read them. We listened to the voicemails that he left for me. The only thing that is accurate about my previous posts regarding these is the duration of the voicemails.

He has never been inappropriate. He has never ranted. The voicemails were a sincere and impassioned warning about Dr. Levin. The emails were offers of support and expressed confusion about why anyone would choose medication other than baclofen, the only drug that cures alcoholism.

I don't know how, I don't know why. I believed that what I was writing was the truth. I know that doesn't matter. I apologize. I know that doesn't matter either.

Dr. Ameisen,

I know that words cannot undo what I've already written. I can't explain my behavior. I certainly don't want to rationalize it.

Your concern for those of us that suffer from this disease continues to humble me.

I am very sorry. And I humbly apologize.

Karen,
No undoing for me as what you wrote reflects entirely what I was told by some members of the French association for the promotion of bac. Besides I was also told that O.A had threatened to sue them for slander before I even had joined the French forum.
Just hope you've not been intimidated.
sincere and impassionate warnings about Dr Levin? Wtf !!!
F.

[ignominious]

Another note from Dr Ameisen

Don't know whether to laugh or cry

EDIT: Think I'll do both

[Ne/Neva Eva]

Another note from Dr Ameisen

Florie,

I've not been intimidated.

I still have more questions than answers. I don't understand a lot. I still feel as though I'm a pawn in this.

The fact remains that the emails and voicemails were lucid, sort of, if confusing. Very confusing.

I continue to be very alarmed that he would call Dr. Levin evil, and say that his protocol and dosing schedules are dangerous, but not offer any help or solutions in the matter.

I don't understand why, if he had the time to send me a very, very outraged and long email 7 hours ago, he didn't just post here on MWO.

I don't understand why there were conditions, and there continue to be conditions, on whether or not he participates in any one of the online forums.

There is much more that is disingenuous or outright harmful that I just don't understand.

There is also more to the story than my own correspondence.

The fact remains that baclofen worked for me. That without his research I would not be where I am. The fact also remains that it was a painful and arduous undertaking, and that when I reached out to him for help, I received no answers.

Dr. Levin, on the other hand, has always answered my emails and my phone calls and my questions, promptly, if not with consistent information.

It is very, very confusing and daunting.

I don't know whether to laugh or cry, either.

[ignominious]

Another note from Dr Ameisen

Calm down first

Then collect your oscar

[ignominious]

Another note from Dr Ameisen

Plus; against my better judgement and because I sometimes give in to my whims:

What part of Dr L's schedule didn't he agree with?